Patient and public recommendations for getting involved in BRC research



Study finds improvement in Patient and public involvement (PPI) at the BRC and identifies room for improvement in future.

The involvement of patients, carers and the public improves the quality of research and ensures we are representing those we aim to help. Being involved in shaping research also has a positive impact on participants.

At the NIHR Maudsley BRC we have our own Patient and Carer Involvement and Engagement cluster led by Professor Dame Til Wykes with support from Dr Emese Csipke. Through this team, service users, carers and the public are involved in setting research agendas, overseeing projects and programmes, and disseminating research.

Our PPI study

A qualitative study by Jo Evans, facilitator of BRC Service User Advisory Group (SUAG) and Dr Stan Papoulias, Research Associate at King’s College London, analysed 52 organisational documents and interviewed 16 staff and service users connected to patient and public involvement to evaluate our progress between 2007 and 2017. It was published in Research Involvement and Engagement.

The study found a positive increase in involvement, including participation of service users in the governance of the organisation and in driving the BRC’s research priorities. PPI has become increasingly embedded in working culture, with diversification and enrichment in PPI activities and evidenced considerable collaborative research work. Highlights also include the increase in local user groups, such as the Young Person’s Mental Health Advisory Group, and the involvement of PPI in priority setting exercises.

“This study has highlighted a diverse range of perspectives and experiences of service users, carers and staff who have been involved in PPI within the BRC. Those perspectives are invaluable in informing organisational strategy and working practice, as well as improving the experiences of the individuals involved.

The full inclusion of the voices of those directly affected by our research can only improve what we do, and I would encourage more service users and carers to become involved in the future of mental health research here at the BRC.”

-Jo Evans, facilitator of BRC Service User Advisory Group (SUAG)

Looking forward

The study also highlighted where there was room for improvements. For example, strides need to be made to restructure the power hierarchy, and to ensure PPI has enough influence over research priorities and working practices. Overall service users were expected to fit in rather than transform the culture and priorities of the organisation.

Dame Til Wykes said:

“We have come a long way in embedding the participation of service users in our BRC research but we can never be complacent. We always need to try harder to make sure they feel that their lived experience counts in all our research decisions, from setting priorities through to authorship of publications and dissemination of our results.”

Tags: Patient and Carer Involvement and Engagement -

By NIHR Maudsley BRC at 20 May 2020, 12:10 PM

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